On the day of your infusion, you will arrive at Gillette, register at the 4th-floor check-in desk, and be directed to the waiting room. When our team is ready for you, a staff member will bring you to a room to take your vital signs, weight, and height. Once we’ve collected that information, you will be directed tothe Infusion Center where you’ll have a small, private room for your procedure.
Infusion Appointments
In the Infusion Center, you will be greeted by your infusion nurses for the day and a member of the Child Life team. Your infusion nurse will review screening questions. Your Nurse and Child Life Specialist will answer any questions and review the day.
One of our Gillette providers will meet you in the Infusion Center to perform a brief exam and ensure that you are healthy enough to receive the ELEVIDYS infusion.
Please be prepared to spend most of your day in the Infusion Center on ELEVIDYS infusion day.
Placing the IVs
Two IVs are required for your infusion. When it is time to place the IVs, your nurse and Child Life specialist will review pain control options. Depending on the child's comfort level, caregivers may be at the bedside, or the patient may sit with parents. Nurses will also take a baseline blood sample.
Waiting for ELEVIDYS
After the IVs are placed, there is a period of waiting as the medication thaws. Pharmacy will start to thaw the medication as soon as the first IV is placed. Thaw time can take between 2-4 hours. We have many activities, movies, games, and crafts to pass the time, but please feel free to bring comfort items from home. We have nutrition services available through Regions and you will be able to order a meal from room service if you wish.
When the medication is thawed and prepared, it will be delivered from the pharmacy in multiple syringes. The syringes will be connected to tubing and then to the patient’s IV. The medication will be delivered from a syringe pump.
Infusion Time
The infusion time depends on the patient’s weight. Heavier patients will have longer infusions than lighter patients. Vital signs will be continuously monitored during the infusion, and blood pressure will be taken every 15 minutes. When the medication is fully administered, the tubing will be disconnected from the patient’s IV, and the patient will be monitored by nursing for at least three hours to assess for allergic reactions and other side effects.
When the patient is at baseline status, the IVs will be removed, and he will be discharged home.
On infusion day, the patient may develop nausea and vomiting. If this happens while in the Infusion Center, he may be treated with IV or an oral anti-nausea medication called ondansetron (Zofran). All patients will be prescribed the medication to use at home as needed.
Contact Us
Questions?
Contact the Neuromuscular Team 651-726-2665 option 3
or
Send a message through the MyGillette Patient Portal
Patient Illness Before Infusion or Other Issue?
Contact Telehealth Nursing
651-229-3890
What to Expect: ELEVIDYS Infusion Day
Your infusion day appointment will take most of your day at the Infusion Center on ELEVIDYS infusion day.
What to Expect After Your ELEVIDYS Infusion
There are three key things - Ongoing Patient Monitoring, ELEVIDYS Side Effects, and Safe Handling of Body Waste.
This information is for educational purposes only. It is not intended to replace the advice of your health care providers. If you have any questions, talk with your doctor or others on your health care team. If you are a Gillette patient with urgent questions or concerns, please contact Telehealth Nursing at 651-229-3890.